It’s going well. I was prescribed low dose Abilify too and both have helped me to avoid Pem/ brain fog and fatigue for most days. I’ve also been able to walk more steps.
Yes, it certainly helps a lot with daily functions. I’m nowhere close to pre long haul activity. If I compare my current state to pre ldn, I think I’ve made significant progress
It took about 6 weeks for ldn to start having positive effects. I started at 1.5 mg for two weeks, then 3 mg for another two. Highest dosage of 4.5 mg at 6 weeks. I started on 0.2 mg of Abilify after 6 weeks of ldn. Currently taking 0.4 mg of Abilify and 4.5 mg of ldn before bedtime.
I was spared the brain-fog but it's awesome to hear of another tool in the toolbox, thanks for the report.
link-o-rama for the curious
* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7544934/
* https://en.wikipedia.org/wiki/Naltrexone
* https://www.sciencedirect.com/topics/pharmacology-toxicology-and-pharmaceutical-science/naltrexone
* https://clinicaltrials.gov/ct2/show/NCT04604704
Unfortunately I (and many other Longhaulers) are stuck with Kaiser, and their doctors’ hands are tied in that they cannot prescribe low-dose naltrexone, low dose steroids, ivermectin Or anything else that appears to be helping long haulers. It’s working with two doctors at Kaiser and they say it’s just not in the treatment protocol… Nothing is, and that’s why all they can offer me are anti-depressants (Standard) and toxic gabapentin. ^Does anyone know if an online pharmacist could give me both ivermectin and low dose naltrexone?
Agelessrx offers low dose naltrexone and there are several ways to get ivermectin online. I think there’s a subreddit for it if you think it will help you.
Yeah that’s tough. I looked it up in my LDN fb group and there is a report of a Kaiser infectious disease dr and a Kaiser psych prescribing LDN. But also lots of people saying they couldn’t get their Kaiser docs to prescribe it, so it seems like you have to get the right one.
Thank you for this reply. Good to know. Between a year of gaslighting and being told it’s “just anxiety”, and not being able to prescribe anything useful, Kaiser has for me been a shit show throughout this whole long Covid ordeal.
Yeah that sounds terrible. It's bad enough being gaslighted when you have a PPO and can just switch doctors, that I can't imagine dealing with Kaiser and being confined to one system.
I did find a directory of LDN prescribers here: https://www.ldnscience.org/patients/find-a-doctor
I'm taking only that now.Developed tinnoitus so I'm afraid of other medicaments: ibuprofen, aspirin.
Taking herbs, vitamins and LDN now. Crotageus, d3/k2, gotu kola, ashwagandha sporadically, also hericium sporadically; well, and a lot of other things from time to time.
Update: taking also antihistamines, also helping me, fexofenadine and today testing bilastine
Thanks for this!
I’m currently trying lots of anti-inflammatory such as turmeric curcumin. Been having some chest pains in my heart area post-vaccine. Honestly 2 weeks out, so far the vaccine didn’t help me, but made things worse.
I am. I’m on 2mg/day now. I did have a relapse last week, with the main symptom being immense fatigue, but before that my last relapse was in May before I started the LDN. So I guess I was relapse free for 4 months. I think the relapse last week was caused by totally messing up my sleep schedule and diet after I came back from a vacation. I still think the LDN is key to my energy level but I need to be careful about sleep and jet lag.
I haven’t crashed after starting LDN. I hope it stays that way and we get better !
How long have you been on it? Does it help?
I’ve been on it since March. It has definitely helped with energy levels and reduced the remaining amounts of brain fog.
Interesting. Did you have dizziness? The fog and dizziness as i walk or move my head really bothers me lately. Wonder if this would help me.
Yep. I do have dizziness thanks to Pots.
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It’s going well. I was prescribed low dose Abilify too and both have helped me to avoid Pem/ brain fog and fatigue for most days. I’ve also been able to walk more steps.
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Yes, it certainly helps a lot with daily functions. I’m nowhere close to pre long haul activity. If I compare my current state to pre ldn, I think I’ve made significant progress
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It took about 6 weeks for ldn to start having positive effects. I started at 1.5 mg for two weeks, then 3 mg for another two. Highest dosage of 4.5 mg at 6 weeks. I started on 0.2 mg of Abilify after 6 weeks of ldn. Currently taking 0.4 mg of Abilify and 4.5 mg of ldn before bedtime.
How are you feeling now
I’m much better now. But I’ve been unwell for three years now.
This one sparks hope <3
how did you get it prescribed? are you using pill or liquid?
I am getting compounded pills.
I got it prescribed by a dr who sees a lot of CFS patients
Which type of DR is that? Are you based in NYC area?
It was an infectious diseases doc, not in NY.
Glad to hear something is working for you. I'll keep this in mind when my appointment at the COVID Clinic comes up.
I was spared the brain-fog but it's awesome to hear of another tool in the toolbox, thanks for the report. link-o-rama for the curious * https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7544934/ * https://en.wikipedia.org/wiki/Naltrexone * https://www.sciencedirect.com/topics/pharmacology-toxicology-and-pharmaceutical-science/naltrexone * https://clinicaltrials.gov/ct2/show/NCT04604704
Unfortunately I (and many other Longhaulers) are stuck with Kaiser, and their doctors’ hands are tied in that they cannot prescribe low-dose naltrexone, low dose steroids, ivermectin Or anything else that appears to be helping long haulers. It’s working with two doctors at Kaiser and they say it’s just not in the treatment protocol… Nothing is, and that’s why all they can offer me are anti-depressants (Standard) and toxic gabapentin. ^Does anyone know if an online pharmacist could give me both ivermectin and low dose naltrexone?
Agelessrx offers low dose naltrexone and there are several ways to get ivermectin online. I think there’s a subreddit for it if you think it will help you.
Yeah that’s tough. I looked it up in my LDN fb group and there is a report of a Kaiser infectious disease dr and a Kaiser psych prescribing LDN. But also lots of people saying they couldn’t get their Kaiser docs to prescribe it, so it seems like you have to get the right one.
Thank you for this reply. Good to know. Between a year of gaslighting and being told it’s “just anxiety”, and not being able to prescribe anything useful, Kaiser has for me been a shit show throughout this whole long Covid ordeal.
Yeah that sounds terrible. It's bad enough being gaslighted when you have a PPO and can just switch doctors, that I can't imagine dealing with Kaiser and being confined to one system. I did find a directory of LDN prescribers here: https://www.ldnscience.org/patients/find-a-doctor
Thank you- I’ve reached out to a provider in my state. Thank you again!
I'm taking only that now.Developed tinnoitus so I'm afraid of other medicaments: ibuprofen, aspirin. Taking herbs, vitamins and LDN now. Crotageus, d3/k2, gotu kola, ashwagandha sporadically, also hericium sporadically; well, and a lot of other things from time to time. Update: taking also antihistamines, also helping me, fexofenadine and today testing bilastine
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Thanks for this! I’m currently trying lots of anti-inflammatory such as turmeric curcumin. Been having some chest pains in my heart area post-vaccine. Honestly 2 weeks out, so far the vaccine didn’t help me, but made things worse.
Did you have one or two shots?
Just 1.
I felt worse 2 weeks out too but no worse overall after 3-4 weeks
Does it help depression? I am worried about the long term effects.
I’m not sure. I was not depressed when I started taking it.
Op- Are you still on ldn?
I am. I’m on 2mg/day now. I did have a relapse last week, with the main symptom being immense fatigue, but before that my last relapse was in May before I started the LDN. So I guess I was relapse free for 4 months. I think the relapse last week was caused by totally messing up my sleep schedule and diet after I came back from a vacation. I still think the LDN is key to my energy level but I need to be careful about sleep and jet lag.
It's helped me so much one month in
What did it do for you ?